Monday, December 3, 2012

There is a statistic floating around that says one in five US households has a child with some sort of special need- be it a mild learning disability, a physical disability, or something more severe like Angelman Syndrome. If you know me or have read my blog for any length of time, you know that Cole and I have a daughter with Angelman Syndrome- a rare and, in her case, random neurogenetic disorder.

I was once told, very early in Ava's diagnosis, that the worst thing that ever happens to your child is the worst thing that happens to you as a parent. I have to remember that often. I will read about parents struggling with something comparatively minor to AS, and think to myself "man, I wish we had THOSE problems!" And I know there are parents out there who feel the same about me! Because the truth is, as profound a disability as Angelman Syndrome is, Ava is doing remarkably well! She is walking before her 3rd birthday, when many with AS never walk. She has sat up and fed herself since before her 1st birthday, which is something some with AS never do. She is making huge strides that some twice her age aren't making...we are really very blessed!

Still, as much as I know we are blessed with Ava's progress and abilities, I still have moments- just about every day- when I see her struggle with something and a sorrow and pain creeps into my heart. And I find myself thinking "why her?" Awww, the "why's." I think every special needs parent, regardless of their child's diagnosis or challenges, have these moments. For me, I find myself thinking "why her? I did everything I was supposed to do as a mom!" and "why her? This was not supposed to be how things happened!" Because you want someone, or something, to blame for what is wrong with your child. When, the reality is, it was God's will. That, for me, was- and is- one of the hardest things to accept. Knowing that the LORD could cure Ava if it were His will, but so far anyway, it isn't. His will is for her to have Angelman Syndrome.

A fellow Angelman Syndrome mom posted something recently that was an amazing reminder to me and just blessed my heart, and I wanted to pass it along. She shared from John 9...

As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."Powerful, right?! "but this happened so that the work of God might be displayed in his life." Ava has AS so that the work of the Lord can be displayed in her life as well. I fully and 100% believe that. Being a special needs parent isn't easy. Far from it. There are days where you want to give up. Run away. Be someone else. But where the challenges are multiplied, so are the rewards! And sometimes the world thinks that we, as parents, have done something wrong to be "punished" with a special needs child. Oh, how ignorant a thought. Having a child with special needs is a blessing no one can understand unless you experience it! Perhaps an unwanted blessing at first, and one that comes with great and unique challenges. But it forces you to be your best, to dig deeper for courage and strength and patience, to turn to the Lord when you feel you can't go on...it forces you to be a better person, parent, and Christian. And that is a blessing!

Sunday, December 2, 2012

12-2-12.... I am officially 37 weeks!!! Archer is now considered a "full term" baby! Although I know from experience with Ava that, if he were to come today, they would call him "near term" and put him under heating lamps to make sure he was fat enough! HA!

My water broke with Ava the morning I hit 37 weeks. I literally rolled out of bed, my feet hit the floor, and a gush of water went everywhere! So when I got up this morning, I was honestly a little surprised that it didn't happen again! I know every pregnancy is different, and mine have been no exception, but I just thought (for some reason) that labor would happen the same way!

I wrote about my "birth story" with Ava here. Honestly, if things happened the way they did with Ava, I would be really happy. There is only one or two things I would change (given the choice) but I don't think you want to read about them! Trust me! HAHA!

I will not go so far as to say that I am all ready. But I think I am as ready as I am going to be. I have been really trying to keep the house neat and tidy- no small task- and the laundry caught up- again, no small task- so that when I go into the hospital, Ava's keeper's at least don't have to search for anything. The "Ava Instruction Manual" is complete- all 10 typed pages of it. It has dividers too. I need to add the addendum for her being on antibiotics right now. But I do have that at least written out. We put the carseat in the van the Saturday after Thanksgiving, and I set the pack & play up in our room that same weekend. I have it stocked with diapers, wipes, Vaseline, lotion, etc... all the things you need for those wonderful middle of the night feedings! This past weekend, I got busy and put together 14 freezer meals. That way, I don't have to worry with food after he is born for a while, which will be nice!

Today is the first day I have also felt emotionally ready, too. Maybe because it is a mental thing-37 weeks. Full term. He is okay to come now. But for the last few weeks I have been trying to soak up every second of it just being Ava and I or the three of us. I know that once Archer is in the mix, it will be like he has always been there- at least that is what I am told. But still, I have been a little sad to think about my girl not being an only child anymore. Especially when Cole is working. It was just her and I for so long when he was deployed, then even when he came home, she and I spent so much time together while he worked. And still, she and I do so much together... it is just hard to imagine having another child along for the ride! I went to Home Depot today with my mom and Ava. We needed a couple of things for the bed, and since I don't know when I am going to have the baby, I wanted to go get them now. After he is here, I have no idea how long it will be before I am able (and willing) to get out and about!

So, little Archer...I *think* we are as ready as we are ever going to be for you to come! So whenever you are ready, little man!!!! Can't wait to meet you!!!